Rare brain tumors strike 8 adults, 1 child in the Acreage

THE ACREAGE — On an MRI, a glioblastoma brain tumor looks like a ghost, a soft gray outline of an early death.

To Bob Haine, it looks like a map of the Acreage: Eight adults and one child living in the community were stricken with the same rare cancer. "To find that many in that small an area is shocking," said Haine, whose son fell victim to the disease.

Almost lost in the childhood cancer cluster investigation in the Acreage are eight adults who developed glioblastoma multiforme, or GBM.

Neighbors started becoming aware of the multiple cases when surviving relatives began talking. Sitting down at the same table at a town hall meeting on Acreage cancer concerns were Haine; his son's widow, Rebekah; and Joyce Gorring and Deborah Peterson, whose husbands also died of GBM.

"In less than two minutes, they shared they had lost their husband," Haine said. "That's when we knew it was bigger than the pediatric tumors."

No scientist, though, is making a similar claim yet about the occurrence of the adult brain cancer in the Acreage.

GBMs are uncompromisingly brutal and mercifully rare: Only about three out of 100,000 people get them.

That's compared with 123 diagnosed breast cancers for every 100,000 women, for instance, or 157 prostate cancers for every 100,000 men.

Odds of survival are bleak. Only half make it past 12 months.

After study, numbers rise

The tumor has previously shown up in a high-profile cancer cluster investigation: Multiple cases at a Pratt & Whitney plant in Connecticut helped trigger a nine-year-long inquiry into possible links between chemical exposure and brain tumors.

Recent study results found elevated levels of GBM tumors at one Connecticut plant. It's not known why. Pratt & Whitney's Palm Beach County plant northwest of the Acreage was not part of the study.

The Florida Department of Health's report on cancer cases in the Acreage did not include a full-fledged separate report on adults. It did examine a breakdown of adult cases, though, and found six cases of GBM tumors among adults between 1997 and 2007.

With a population of about 39,000 as of 2007, the percentage of Acreage cases is about what you would expect to see compared with the state as a whole, said Dr. Sharon Watkins, the department's ranking epidemiologist. However, the department stopped counting cases after 2007, a spokesman confirmed.

Identifying details about the cases collected by the state are not public information, but relatives of four victims diagnosed between 2004 and 2007 identified them to the Palm Beach Post, which also found one case diagnosed in 2008 and another in 2009.

Also, one of the cases in the pediatric cancer cluster was a GBM, bringing the number of those tumors in the community to at least nine.

The six found by the Post all were diagnosed in a five-year period. All lived within 7 miles of each other, some just streets apart, and all have died. Of the six, five lived in the Acreage 10 years or longer.

There is another number: age. The tumors do not respect age — they have been found in babies — but in one published academic study involving Los Angeles, fewer than one in every 100,000 people younger than 50 were diagnosed with the tumor.

Among the nine known Acreage cases, six were 49 or younger, including a 29-year-old, a 20-year-old and the child, whose age has not been released by the state.

"My heart goes out to those people with the children, but when you have so many adults, you can't just dismiss it," said a 17-year resident of the Acreage who asked not to be identified. Her husband died of GBM; the couple had already moved from the community when he fell ill and is not among the total cases counted by the Post.

A cluster? It's hard to say

Absent a study, the possibility that the Acreage grouping is random can't be ruled in or out, said epidemiologists interviewed for this story.

"It's hard to say if it is a cluster," said Dr. Henry Friedman, co-deputy director of the Preston Robert Tisch Brain Tumor Center at Duke University Medical Center. "It could be a constant variable, or it could be the unluck of the draw."

For instance, an in-depth look at the ages in the Acreage cases might come to a different conclusion than the Los Angeles study, said Jill MacKinnon, project director for the Florida Cancer Data System, a registry of all reported cancer cases in Florida.

And the scattering of cases in a specific community could be random. True clusters "are just so hard to find," MacKinnon said.

That's not to say the state would be prompted to look at the tumor separately from its current cancer investigation.

"We welcome reports of possible additional cancers," said Watkins of the two cases not counted by the state, adding that the newly formed Acreage Neighborhood Information Center can take self-reported cases and make sure they are in the Florida Cancer Data System, the source of data being used by state health officials.

However, nine cases in 13 years may not be enough to warrant further examination.

"From the state's point of view, looking at those numbers, I would not necessarily find that alarming," Watkins said.

And Acreage resident William Featherston, whose stepson died of the disease, expressed concern that a separate investigation of adult cases could divert efforts now under way to pinpoint causes of the pediatric tumors.

Gorring, whose husband was stricken almost simultaneously with three separate cancers, including the tumor, disagrees.